Accessing your own genetic data

This follows out of a discussion between stigmatica and sistamatic a little while back about access to genetic info. The cost of genetic sequencing is falling, making personal genomics services like 23andme viable. Consumers can send away a small sample, have their genes sequenced and then learn all sorts of interesting stuff about their ancestry and hereditary traits.

Presumably you can also learn lots of useful health information from such a test that might suggest specific risks and interventions that could be taken with regards to people's health. But the FDA has cracked down on companies such as 23andme providing access to this sort of information to their customers.

Do you think this is justified? What are the pros and cons of having this sort of info? Would you want this sort of info for yourself?

I really don't understand this or the "trace your ancestry" places. People really think sending off your DNA to God only knows who is a good idea? Wtf?

I understand the business side of it. The larger the pool of data they have, the better the conclusions they're able to draw from it. But that requires a lot of samples. Usually with genetic testing and scientific trials consent is an issue. So get people to send you samples willingly by offering to tell them some fun trivia, while meanwhile you build up your database of samples you can play with. I'd be really interested in seeing what's in the fine print.

The FDA cracked down on 23andme specifically because they hadn't bothered to go through the proper regulatory channels to offer a service that accepts biological samples from the general public. They only got away with it because the founder happens to be the wife of Sergey Brin. So, fair enough, those regulations are there for a reason. They also resell all your data to third parties, and don't release it to researchers. I'd say avoid them like the plague.

What I really want is to have my whole genome sequenced, which would be a lot more valuable than just a set of results based on a limited SNP analysis. It costs a significant chunk of $ though, even if you work in a sequencing lab. I've thought about trying to get in on a genetic study just for the sake of getting my hands on the data. Sadly I don't have any interesting diseases that people are studying.

I'd be curious about this. I went through my life thinking that I'm a quarter Lebanese, and it turns out that that quarter is split between Lebanese and Syrian. My whole world was turned upside down. Who am I?